Research for Rare - Research for rare diseases

MND-Net - Network for Motoneuron Diseases

Motoneuron Diseases, specifically Amyotrophic Lateralsclerosis (ALS) are diseases, with comparatively high incidence rates (2.5-3 per 1000) and a low prevalence rate (6000-8000 patients in Germany). Therefore a long-term collaboration of all relevant German ALS/MND groups is necessary to develop diagnostics and therapeutics of these diseases in an internationally competitive way.

In the frame work of the consortium we establish a collaboration of the important German Centers for Motoneuron Diseases (ALS) and build up a German Register. With the support of this register will develop genetic and proteomic biomarkers, establish a tissue bank, measure patient reported outcomes (ePROs) in an internet-based manner, develop the basis for therapeutical interventional studies and analyze the psychosocial consequences of these rare orphan diseases. Also, we will support groups of basic scientists with in vivo and in vitro models. We will train young scientists, in particular clinician scientists and we will build up a keratinocytes-based IPS cell bank resource.
The biomarker and genetic studies are the basis of development of new diagnostic and therapeutical approaches. The studies on nutrition and psychosocial consequences will also be the basis for interventional studies. The patient reported outcome project (ePROs) is able to evaluate these projects. The tissue and IPS cell bank, the in vitro and in vivo models will support all participants of the network for translational and basic science projects.

Prof. Dr. Albert Ludolph
Prof. Dr. Jochen Weishaupt
Universität Ulm
Universitätsklinikum – Abt. Neurologie
Oberer Eselsberg 45
89081 Ulm
Phone: 0731 177-1201